The painful face of poverty.
The painful face of poverty.
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DOI：
10.1002/pbc.21856
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发表时间：
2009-02
影响因子：
3.2
通讯作者：
Wang W
中科院分区：
文献类型：
--
作者：
Hankins J;Wang W
按照 0 到 5 分的痛苦程度，1 镰状细胞病 (SCD) 儿童的医疗保健系统的痛苦程度为 5。在一个 SCD 护理和研究进展被誉为世界最佳的国家，患有这种疾病的儿童仍然得不到充分的医疗保健，因此无法充分受益于科学研究的实质性进展。在美国，这种疾病影响了近 100,000 人，其中大多数是少数民族人口，他们贫困且难以获得足够的医疗服务。数量惊人的 SCD 儿童没有保险或没有在 SCD 专门中心（综合镰状细胞中心）接受护理。此外，致力于护理 SCD 患者的血液科医生和其他医疗保健提供者的数量不足以为这一人群提供足够的护理。在患有 SCD 的青少年过渡到成人护理并且经常依赖急诊科服务作为其主要医疗来源后，这些问题会被放大。获得充足医疗保健的机会减少反映了另一个问题：对 SCD 患者昂贵的护理费用的补偿不足。与任何慢性儿科疾病一样，SCD 的治疗需要更频繁、更大量地使用医疗资源，但管理式医疗组织和儿科医生并没有获得反映这些儿童护理成本高昂的补偿率。 2
On the 0 to 5 pain faces scale, 1 the health care system for children with sickle cell disease (SCD) gets an excruciating 5. In a country where advances in care and research for SCD are praised as among the best in the world, children with this condition continue to receive inadequate health care and consequently fail to fully benefit from substantial progress in scientific research. In the United States, the disease affects close to 100,000 persons, most of whom are members of minority populations who suffer from poverty and sub-optimal access to adequate medical care. An alarming number of children with SCD are uninsured or do not receive care at specialized centers for SCD (Comprehensive Sickle Cell Centers). Moreover, the number of hematologists and other health care providers committed to the care of patients with SCD is insufficient to provide adequate care to this population. These problems are magnified after teenagers with SCD transition to adult care and not infrequently become dependent on emergency department services as their primary source of medical care.Decreased access to adequate health care reflects another problem: poor compensation for the expensive cost of caring for SCD patients. As with any chronic pediatric condition, management of SCD requires more frequent and more substantial use of medical resources, but managed care organizations and pediatricians do not receive compensation rates reflective of the high cost of caring for these children. 2
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影响因子：
3.2
作者：
Raphael, Jean L.;Shetty, Priya B.;Mueller, Brigitta U.
通讯作者：
Mueller, Brigitta U.
影响因子：
39.2
作者：
Brawley, Otis W.;Cornelius, Llewellyn J.;Schori, Melissa
通讯作者：
Schori, Melissa
影响因子：
158.5
作者：
ADAMS, R;MCKIE, V;HESS, D
通讯作者：
HESS, D
影响因子：
1.2
作者：
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通讯作者：
Anderson, GF
影响因子：
12.8
作者：
Lanzkron, Sophie;Haywood, Carlton, Jr.;Dover, George J.
通讯作者：
Dover, George J.